About a winter ago I did a winter-themed series of watercolors based mostly in Upstate NY for an exhibit at a local café. winter light put me in a wide awake state of mind.
The last few weeks, punctuated by wild storms, figurative and literal, have my mind wide-awake and not always in a good way. Still, I embrace the turbulence. Buffeted by winds, we’re traveling back from the grocery store in Greenwich, New York, hardly able to see the green mountains ahead of us, we’ve spent the summer with our hairs on end and our fists clenched as we sit on the edge of our seats, perversely feeling more alive — more cognizant of life — than we ever could under a crystal clear sky.
Last night complications from his colonoscopy combined with his shaky condition warranted a call to Thing1’s doctor. As I waited for the pediatric G.I. on call I thought, as I have more than a few times since this journey has begun, how well he has had to learn one of life‘s most important lessons.
A younger sounding woman got on the phone and asked his latest symptoms. She sympathetically told me to monitor him through the night and gave benchmarks for when I should take him to the emergency room. I hung up thinking, as I have many times over the summer, how incredibly lucky we are.
Several times over the summer we have visited Dartmouth-Hitchcock to have iron infused or blood transfused. The infusion rooms accommodate two patients at a time, and while I don’t subscribe to the idea that misery loves company, company often gives the gift of perspective.
A young woman was already in the second chair when we went to the first iron infusion. She told us that she had just been switched to a new biologic to treat the ulcerative colitis that had plagued her for almost a decade.
“Yeah, I was just in the hospital for three months,” she told us, her tone sparkling with sarcasm. “My insurance brilliantly kicked me off my old drug that was working for three years, and I went into the worst flareup of my life.” She went on to tell us about all the longterm hospital stays and the drugs she had tried over the years, including a brief but successful stint with medicinal marijuana that ended catastrophically when a new job told her that a positive THC test what get her fired. She told us how great T1’s new drug had been for her and how that success had also been interrupted when an insurance company dropped coverage for it.
“Assholes,“ she and the nurse who had just come in to load T1’s IV said in unison. They each sounded a bitter laugh. She said considered she still herself lucky because she was able to get care. No one in the room needed to be reminded that there are plenty of people without adequate care and some with little or no care.
Through all of the tests and infusions and diagnostic procedures, T1 has had access to the best possible care, and we owe that access almost entirely to good luck. We found his pediatric G.I. through a connection with my father, a retired pediatric G.I. who still consults and is engaged in research around the world. We were able to transfer his referral to that hospital because I lucked into a job that not only covers 100% of our health insurance premiums in a good plan but fully fund our co-pays and deductibles, fundamentally changing our healthcare strategy for him to focusing on the quality of care.
I work hard at my job, and I love the company I work for — not just for the insurance but for the people. Every day, however, I realize that finding this company that protect its employees so well was a stroke of luck. If I were still at the previous job, my insurance would have conked out after I picked up the first $800 a month prescription. every day, I also realize, that finding the right person for the right treatment should not depend on knowing someone who knows someone.
Every once in a while as we’re driving home, when T1 is feeling particularly tired, he’ll try to divine the cosmos and figure out what he did to deserve this. he never got in trouble at school. He’s always willing to help, and, as he has reached adulthood, has taken it upon himself to watch out for the needs of the people in his life. So he’ll wonder aloud if he could have played fewer video games or done more homework to prevent karma from leaving him so incapacitated. It never takes more than a mile or two before he says the kind of thing that makes me most proud of him.
“I don’t deserve this. Nobody really deserves this,” he’ll say. “I wouldn’t even wish this on somebody who had done something really bad.“ About the time we’re passing the Quechee gorge, he’ll usually confirm for me once again, that he has learned when the most important lessons in life.
“Life just isn’t fair.“
Driving home from that infusion, however, we talked about how funny and bright that girl in the infusion room was. We talked about how it wasn’t life but a system made of people making conscious decisions that resulted in an unfair reality where drawing the lucky paycheck card lets one young person focus on the quality of their care while an equally hard-working and promising young person spends a disproportionate part of her life fighting for the access to the bare minimum care just keep herself alive and out of the hospital for most of the year. We both understood that, there but for the grace of God and the system, T1 could be in her chair.
Thing1 has accepted his illness. We all have. We are all understanding that being ill has nothing to do with fair or unfair. What each visit to the infusion lab and each conversation with other patients at the hospital has taught us is that much of the unfairness in life is the result of the world we have made. It didn’t just happen.
Next week or next year, Thing1 will be going into his adult life. He understands that often the world won’t seem fair because it isn’t. What I’m hoping this experience, what these perspectives gained from the company we’ve been keeping, will teach him is that the system will ultimately be as fair or unfair as we decide to make it.
All practice on long-term projects has pretty much ground to a halt lately. The only writing that happens over the last few weeks is on my blog. What has been going bonkers (Aside from the usual mayhem at our house), is the mini gallery that springing up on my office bookshelf.
I don’t know why, but for me, painting is more powerful than Prozac. It has the added bonus of being a series of short term projects which is – oh look at the cute little kitty – great for somebody with Omni-directional Attention Disorder (attention APA, I want credit when this disorder is officially diagnosed and named).
Normally, the summer is Art fair season for me, keeping my already “cozily” full shoebox of studio from overflowing with paintings. I switched to working weekends over the last year, however, and art fairs (with the exception of the Fall Open House at Bedlam Farm which will be pulled from my paint-covered fingers after the kids have me committed) are on hold indefinitely. Vermont has an open studio day, but I’m pretty sure any good liability lawyer will warn me of the dangers of inviting non-hazmat certified art lovers to trek through our house to my bookshelf gallery.
I haven’t done a lot of online sales because handling things like sales tax and shipping costs have always been more complicated tasks than I wanted to manage on my webpage. On my weekdays off, though, I’ve been watching the success of friends on Etsy and decided imitation is the sincerest form of flattery.
So, for the last few days, I’ve been setting up an Etsy shop. I haven’t made too much fanfare yet, aside from a couple links, but it seemed appropriate to announce a “Grand Opening” on this page now that there are more than 2 paintings up there (I have 4).
I’ll be adding notecards and watercolors, as well. Wood stove season is coming, and oil and open flame seem like they may be a bad idea, so the selection on here should evolve a bit with more watercolors.
For now, I’m dipping my toes in the water, and, having missed beach season (not a big loss since I don’t really like the corequisite swimsuit season), this seemed like a fun way to end the summer.
Yesterday we made our semi-weekly journey to Dartmouth for Thing1’s endoscopy. It’s 4 days before launch day, and, at 9:45 AM yesterday, lift-off for college was anything but guaranteed.
I walked him into the pre-procedure room in the endoscopy unit and waited while he got changed and settled on his gurney. When they came to start the anesthesia, I kissed him goodnight and went to wander through the hospital, a restaurant pager in my pocket to let me know when they were done.
I went back less than an hour later. The doctor was already in the waiting room looking for me. The look on her face was as telling as the pictures of T1’s colon that she had printed. That was all the proof that the last eight months of injections and diet management, pills and fighting with the insurance company had done little to put the brakes on the progression of his disease.
We talked about the next steps – a new drug that might work or not over the next four weeks as we work to get him healthy enough for the surgical nuclear option. T1, the Big Guy, and I had already discussed the very real likelihood that T1 will be withdrawing from college in January, but, as the doctor talked, I realized that trying to start in 4 days was risky at best.
The doctor had to go to another colonoscopy but said she would meet with us in recovery in an hour. I went into the little corridor between the waiting room and the endoscopy unit and stopped to lean against the wall and cry. Even if his academic future had not been thrown further up in the air, the images of blackened tissue would have made me sob, and there was no way I was going to do it in front of him.
I wiped my face and slapped my cheeks to reset my expression. Then I went into sit with T1 as he woke up. When he asked the results, I was honest. He has been going through this for too long for us to insult his intelligence by sugar-coating bad news.
After another uncomfortable conversation with the doctor, however, it became clear that T1 had already done the mental calculus to try to manage the next drug failure long enough to get through the first semester. He was still planning for lift-off on Friday.
My stomach clenched as I imagined him driving himself 2 hours to the hospital with his uncontrolled flareup or more anemia. I knew I could use the maternal bully pulpit to push him into what I see as the ‘right’ decision, to delay his enrollment for a year and get healthy enough to have and recover from surgery. I also knew that where a year’s delay for a 50-year-old is a few minutes, it can seem like a lifetime in a life over which an 18-year-old is just starting to take control.
He officially became an adult two weeks ago last Sunday. The decision to have life-altering surgery, the decisions about which drugs he’ll try next, even the decision about how to start the first phase of his adult life are now ultimately his. We can advise him, give him our opinions, but we can’t make those decisions for him.
It’s three days till launch day. We’re still trying to make sure he has all the information he needs. I haven’t stopped advocating for the safe option. The Big Guy, of course, has his own opinion about the situation and will certainly weigh in. I am starting to understand, however, that accepting his disease is acknowledging that not only do we have little control over it, but we have to start ceding control over how T1 will respond to it or any other part of his life.
Acceptance isn’t the same thing as surrender, and it isn’t always accompanied by hope. It is a way forward, and no matter where he is going, we will have to begin that journey by starting to let go.
So I’m testing a new theory that as you approach the start a new decade your tendency to act your age diminishes by a factor of 10. At least on some fronts.
I’ll be contributing the following as evidence to my future peer reviewed paper about how infantile behavior at the tail end of your forties can be a blast: whether or not you’re supposed to, I’ve started fingerpainting when I making skies in oil paintings. Go ahead, you can say it. I am officially five again.